Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

So I have been trying to get my shit together and yesterday I had my first meeting with the therapist and of course ,I disclosed to her- no problem.

I promised myself when the trip lets got into a full day I would get my GYN appt done- Did that today- disclosed again- No problem.

I had a meeting with my sons(4 yr old) teacher today regarding his IEP, they did a psych eval and I was there to talk it over with everyone. So they are getting history from me and me being on disability comes up and the psychologist asks "Why, We would like to know if it has had any affect on your son as far as hereditary that kind of stuff" So I just kind of sat there for a sec thinking, should I tell them, should I not tell them, he was on AZT, I was on meds while pregnant, all these thoughts are going through my head and then I just said " I am Hiv postive" There was a silence, my sons teacher got kind of red in the face, nothing was really said about it and the meeting continued and we discussed a plan for him (he has developemental delays and is working at the age of 3 and will be 5 in June) After everyone leaves the shrink and I are talking and he says" I hope you didn't have a problem with that" and I said" No, as long as it stays confidenital." "Oh, of course, it will"

So I did fine through the whole meeting which was an hour and half but as soon as I am in the parking lot, I start crying and I can't figure out why. Part of me feels like an idiot for telling them , part of me is scared that his teachers knows. Is it because I wasn't prepared for it and wasn't expecting it? Deep down I realize I am never going to be able to control who knows and who doesn't but I just feel fucked up right now. One of my biggest fears of disclosing is how it will affect my kids and if people would treat them any differently, otherwise I don't think I would care. Anybody else every experience something like this?

Deep down I realize I am never going to be able to control who knows and who doesn't but I just feel fucked up right now.

That really is the gist of it. You can't control the information once it is out there and it is scary when you feel that you aren't just protecting yourself, but your child.

I don't know if you should or shouldn't have disclosed, but I do know it is not worth getting too upset about it now that it is out there. It may be worth your while to mention to the school psychologist about your fears of the teacher's reaction and perhaps schedule a talk between the three of you to make certain there are no misunderstandings.

Iggy has a good idea. As a professional educator teaching teachers about disability education, I can assure you that you will feel better once you gather your thoughts and speak clearly about your concerns. Confidentiality is guaranteed by law, but sometimes teachers' professionalism isn't what it could be despite the law. You taking a proactive stance will help you feel in control of a naturally unnerving situation.

Snow… Disclosure is a tough event. And it’s even tougher event when it happens unexpectedly - IE having to make that snap decision whether or not the moment is appropriate. It’s after those moments that one fully realizes this cat aint going back in the bag. And if you’re anything like me, I say I don’t give a shit who knows or how they feel about my being positive…but… I honestly do. Sooooo -couple of suggestions. (1) Evaluate your comfort levels before hand. I participated in a class through the Denver ASO called “Living Positively” Part of the class was to evaluate and develop decision parameters about who, what, when, why and where I might feel disclosure was appropriate. Knowing ahead of time who I want to entrust with knowledge helps when those snap decisions pop up. If you’re not in the circle of trust… (2) It’s okay to defer a disclosure or answer. Give yourself time to think about it and weigh your options. It’s the rare situation we owe anyone an immediate disclosure. Better to communicate at a later moment in the situation of your choosing then feel you’ve lost control. (3) Don’t look back in regret… look back and learn. There’s enough in life waiting to kick us in the ass, no need to do it to yourself.

Here’s hoping all turns out for the best Snow. Try not to fret and sweat…

Logged

Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Snow, I agree with all advice that's been offered. It's alright when it's just us. Kind of harder when kids are involved. My daughter's friends are all open-minded and don't have a problem with it. So I feel comfortable around them. As for my grandchildren, well, the kids and kids' parents they deal with might not be so forgiving. But you said you disclosed to a teacher. They should keep that private. Of course there are no guarantees about anything, no matter who it is we open up to.

You did what you felt needed to be done, and at the end of the day if there's no regrets, that's all that counts.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I have a lot of experience with IEP meetings in the profession I am in. You have every right to get information deleted from the paperwork that you do not want on file. The school psychologist had no right in asking the question that way. You do know that you can request an IEP meeting at anytime and the school district has to respond to you within a certain time. You did get copies of everything didn't you? Read it over or even let a trusted friend read it over to make sure there isn't anything written down that you don't want to be on record.

Somehow when I was working at a school a few years back, my status was leaked out by someone. The principal proceeded to call around asking "What do I do? I have a Speech Therapist with AIDS and he's touching kids' mouths" I ended up filing a complaint and the district apologized and recommended she take an HIV sensitivity training. They never followed through, so I left.

I can so relate to how you're feeling! I don't enjoy going out and meeting new people at all these days because it's just that many more people who want to know the simplest things about me like:

New Person: "Where do you work?" Me: "I'm retired."New Person: "Retired?!? You're too young to be retired!"Me: "Well I'm on disability if you must know."New Person: "You don't "Look" handicapped to me! What's wrong with you?"

Most people who know me know my first husband is dead. So when I say I'm on social security, I think they assume it's from my first husband's death and usually don't push it any further (the ones I don't feel like disclosing to).

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Snow,Good for you. As a teacher I would appreciate your disclosure. As for your son being developmentally delayed. I think that having him tested early and finding early interventions for him is a very responsible thing for you to do. I applaud your forsight to get your child the help that he needs early. Developmentally boys do develop slower. Sure the meds and the extra stress and emotional difficulties of your condition may affect his development. Just know that you have given him the ability to develp strategies to get through life. By having a working IEP you have also given him the oppurtunity to learn strategies that other kids do not get. Your a good mother and doing a good job to help your child live a successful life. You have my admiration.Peter

First I would like to concur with the advice you have received, it is to the point. You guys totally rock! Snow, disclosing is hard for many of us, but as you have been told, that is your choice. I do not have kids, but I have had to help raise my biological siblings from a young age due to a my sickly mother who passed away at age 50 four years ago. It appears that you are putting your children first, and to me that is a sign of a good parent. Good for you... Take care, D

Logged

Nothing in the world can take the place of Persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan 'Press On' has solved and always will solve the problems of the human race. Calvin Coolidge

After venting with my last message.... I just want to let you know that if you have any questions about the IEP process and services, let me know. I know there is at least one other parent on here that deals with it as well. I know it can be confusing and overwhelming even though the intention is to provide your child needed services. Remember it is an IEP team, and you are the most important member of that.

Morning-Thank you everyone for your kind words, I feel much better about the whole situation today, I can't really put in words how much I appreciate everyone that has replied.

SteveA- I hate those conversations . Been there, done that and it sucks everytime. It has been hard with my family because they are concerned about how I pay my bills so far it has been like a huge white elephant in the room that no one really wants to find out about ...which is fine by me.

Sharkie- Good for you for filing a complaint, it sucks that you even had to go through that though. I feel pretty confident that nothing was written down anywhere but when I do receive my copy of the report I will scour it with a fine tooth comb and take Iggy's suggestion and have a follow up conversation with the physcologist. Thank you so much for you offer to help me decifer his IEP. That means so much to me. At times yesterday I felt like they were all speaking a different language. Morbid co-factor ,for example, when he explained it to me I still didn't understand why they use the word morbid? The psychologist also gave me an additional set of questions I need to fill out and give to him so that he can add it in to his final report which he wants me to bring to the pedi. I will let you know when I have more info. Thank you so much.

Florida and Peter- Thank you guys too. Deep down, I think I felt I was doing the right thing for my son but I still have that fear that I hope someday will turn into a strength.

Peter and Sharkie- As professionals, wouldn't you factor in that he is a trip let and born prematurely? Some of the people in the meeting didn't realize that he was and they were concerned that he has anti-social behavior. He is with his brother and sister 24-7, don't you think it would be normal for him to want to be by himself at times? He is not mean about it, he just kind of goes off by himself and does what he wants to do.

Snow, Hubby and I are contracted to work for our state's Birth to Three (Early Intervetion) program. Prematurity and developmental delays to some degree can go hand in hand. We've gone to many IEP's as advocates and the system, at least here, isn't set up for INDIVIDUALIZED programs. They want everyone to be lumped into some kind of a box. We see it all the time. You handled it well and you are a wonderful mom. Don't let anyone make you feel otherwise.

On the other side of that: For the whole 3mths Mini was actually in public school we filed for a 504 medical plan. It allows for steps that need to be taken to ensure the health and safety for children who have medical issues. In addition to her HIV, she also has cerebral palsy and diabetes. These were the issues that we wanted addressed. However, we also wanted to make sure that kids washed hands, that if a child presented with an illness, that either they were seperated while waiting to be picked up, or that we were called so that we could pick up Mini without her being penalized for missing school. When I got there, the whole thing went downhill fast. First, they had the plan already written. That is against the law, according to 2419 (?). So, if the IEP was written without you contributing, they violated your rights.

Anyway, in the plan, one of the "goals" was that "(Mini) would be able to discuss her immunity issue with adults and be able to tell them what she has and explain how it impacts her life." I ripped up the page!! Mini was 5yrs 1mth old and this idiot wanted the right to interrogate her about her HIV status. The only reason they did that was because all of the documentation stated that Mini had a "federally protected" class of virus and was under no legal obligation to fully disclose its name. Needless to say, she didn't stay.

Keep up the good fight, hun. If you want a copy of 2419 (it's federal policy), you can either google it, or PM me with your address and I'll mail you a copy. I also have stuff about the IEP process and your rights. Just let me know if there's anything I can help you with.

Thank you, Mum. I will check that out and let you know. My older son has an IEP for dyselxia so it would probably be in my best interest to find out all the ins and outs of these things and what are rights are. It is just overwhelming at times because when I was growing up I don't remember so much stuff being thrown at me at a young age. Plus all the jargon they use doesn't help me either and my concentration sucks these days especially if I don't understand something. All in all I just want the kids to have the tools they need to be happy and productive people. I will let you know and I really appreciate your offer!

I think whoever wrote that thing for Mini should be taken out and shot. What an ass! Some people just suck big time!!

Snow, Hubby and I are contracted to work for our state's Birth to Three (Early Intervetion) program. Prematurity and developmental delays to some degree can go hand in hand. We've gone to many IEP's as advocates and the system, at least here, isn't set up for INDIVIDUALIZED programs. They want everyone to be lumped into some kind of a box. We see it all the time. You handled it well and you are a wonderful mom. Don't let anyone make you feel otherwise.

On the other side of that: For the whole 3mths Mini was actually in public school we filed for a 504 medical plan. It allows for steps that need to be taken to ensure the health and safety for children who have medical issues. In addition to her HIV, she also has cerebral palsy and diabetes. These were the issues that we wanted addressed. However, we also wanted to make sure that kids washed hands, that if a child presented with an illness, that either they were seperated while waiting to be picked up, or that we were called so that we could pick up Mini without her being penalized for missing school. When I got there, the whole thing went downhill fast. First, they had the plan already written. That is against the law, according to 2419 (?). So, if the IEP was written without you contributing, they violated your rights.

Anyway, in the plan, one of the "goals" was that "(Mini) would be able to discuss her immunity issue with adults and be able to tell them what she has and explain how it impacts her life." I ripped up the page!! Mini was 5yrs 1mth old and this idiot wanted the right to interrogate her about her HIV status. The only reason they did that was because all of the documentation stated that Mini had a "federally protected" class of virus and was under no legal obligation to fully disclose its name. Needless to say, she didn't stay.

Keep up the good fight, hun. If you want a copy of 2419 (it's federal policy), you can either google it, or PM me with your address and I'll mail you a copy. I also have stuff about the IEP process and your rights. Just let me know if there's anything I can help you with.

:-*Mum

Thanks for sharing that Mum

I also want Snow to know, to not be pressured to sign anything until you are understand what program you have written TOGETHER for your kids. Was a full assessment done,with OT (occupational therapy) for sensory and fine motor issues, as well as SPT (speech and language therapy)? Oh my goodness, I have so many questions for you, sorry, I just get very passionate when it comes to kids.

Sharkie-What has been happening for my son is he receives speech therapy 2x a week, once with his class as a whole(about 7 kids) and then once with maybe 1 to 2 other kids. I think what she said is that he needs moderate prompts. His speech has improved a great deal in the last year, he was doing a lot of the twin talk and gibberish and that has pretty much non-existent now.As far as I know he has no OT therapy at all because that was not a concern for him at all. That is about it as far as a program. When I say 2x a week I can't really tell you how long it is for. He is only in preschool for 2 hours so how long could it really be? They will be mailing me something shortly and I will let you know. You can ask me anything you want, I really appreciate your concern.Take care,Snow

I went and spoke to the counselor/psychologist this week so I could fill out the BASC form, a ton of questions about the my son(I don't know if that is the right name) and just to make sure nothing I disclosed would be in any of the reports. He assured me that it wouldn't and said that he appreciated me being honest and that it was kind of shocking. Then he went on to say that the parents get like 3 requests to come to these meetings and if they don't show, the teachers assume the spanish mothers are at home eating popcorn watching TV?. Which kind of threw me for a loop because it is a predominately spanish school and he is spanish UNLESS they thought that my kids were spanish and were suprised I am white but his teacher has certainly seen me. I don't know, that comment dumbfounded me but I was happy with what he was saying as far as the report and my son was concerned.Now ,I just have to get the report Take care,Snow

I'm glad you got the "disclosure" issue cleared up f. I know how tough it is when it just slips out of your mouth and before you know it...oops "did I really need to say that?"

But...your son's school psychologist is pretty lucky that I don't live near you. I think I would have ripped him a new asshole. His comments were so fricken inappropriate. Now I don't want to fire you up about him or anything, but he sounds like a jerk. Anyways...

If I did live near you , you certainly could count on me as being an advocate for you and your son.

keep me updated. especially if you have any questions about the IEP process or general speech and language issues.

My aussie is very protective of me; especially with other men. I decided to try to go on a date about 1 1/2 years ago, but my girl decided that I wasn't ready to date yet and immediately jumped up and bit him on the nose. Ended up taking the fella to the emergency room. Luckily he didn't file a complaint, and that ended my desire to date.

Oh Snowangel! What a lot of stress. I am a teacher and no one knows about my status. It is amazing how those in "education" seem to know the least. I am sorry that happened to you. I hope it all works out.

Thank you, Viv. I think it all worked out in the end, I hope anyway, the trip lets are going to another school across town for kindegarten so I won't have to see any of the people in the room, theoretically

Sharkie- I guess, she is protective, my goodness I am glad he didn't press charges, maybe she knew he wasn't the one for you?

it reminds me of a little client of mine. Her mom and I are betting that her first words are going to be "YOU ARE A FUCKING BASTARD" (cause she is always screams while she sees me as I try to get her to make sounds.) did I say I love my job lol

That is too cute , Sharkie! I bet you could right a book with all the cute and funny things kids say and do while you are helping them. The one in the pic used to roll around on the floor and give googly eyes to the EI women that would come to our house. He is such a flirt.Hope you are feeling better today!Snow

First of all I think it is wonderful that you are so involved and want to be educated in this subject. I can't tell you how many times I have been in meetings with parents who really don't care to be informed and are just happy their kids are getting help (without knowing what help they are or are not getting)

You should have been given an assessment plan to sign before they started testing. There should be a timeline on this plan. You should have also receive a copy of your parent rights. You might want to call them and ask to speak to the program specialist or coordinator and ask what the timelines are. Give them a gentle nudge that you have concerns.

You did nothing wrong. If you can't feel comfortable disclosing this in a confidential setting, where could a person possibly start? Who knows, a disclosure in this kind of setting might open up new doors to resources you might never have been aware of. There are key people that have the knowledge and access to resources that most people aren't even aware of. But they can't help you if they don't know you exist. You have extra stresses that other moms don't have, these stresses come into play with everyday life.

Let's pretend that the teacher and psychologist didn't know about your HIV status and we are two years down the road...You didn't mention your son's name so I will call him Billy...Billy continues to have a tough time and the teachers aren't sure why...is he spending enough time on homework at home...maybe mom has distractions at home...does mom work too much...Is mom too muck like Britney? And then we finally find out mom is dealing with HIV..., so she has the added pressures of trying to stay healthy, keeping track of extra meds and and who knows what else.

Like Duh!, why didn't someone tell us so we could help?

Well that someone has told the school, let's see what happens, good luck.

I'm not finding exactly what I am looking for but the above resources are a start, You can make general inquiries and let people know your looking for this or that and they will let you know what services they offer or may refer you to a more specific agency or group...basically your looking for somebody who knows somebody...

Guys,After a couple more phone calls, I finally get the letter today.Right off I am pissed because under relevant information they have " William is a 5-year 2- month old male"? Willy will be 5 in June. Then each time they have assessment or evaluation they have the date is it done and they have his birthdate??? I know these are just formula issues but don't they check shit before they send it out?Then I don't know what the numbers mean?Raw Score: 13Standard score: 106Scaled score: 11Percentile: 65Age equivalence: 4-10-----if this means 4 yrs 10 months, that is his current age??? Oh, this was on visual motor, there is also a SRC section. Why can't they put this information in a way a parent can understand it?Sharkie, Peter....HELP !!Snow

Guys,After a couple more phone calls, I finally get the letter today.Right off I am pissed because under relevant information they have " William is a 5-year 2- month old male"? Willy will be 5 in June. Then each time they have assessment or evaluation they have the date is it done and they have his birthdate??? I know these are just formula issues but don't they check shit before they send it out?Then I don't know what the numbers mean?Raw Score: 13Standard score: 106Scaled score: 11Percentile: 65Age equivalence: 4-10-----if this means 4 yrs 10 months, that is his current age??? Oh, this was on visual motor, there is also a SRC section. Why can't they put this information in a way a parent can understand it?Sharkie, Peter....HELP !!Snow

I"m in DC right now, howdy

any score between 85-115 is within the average range. and the percentile score is within the average range. age equivalence means that children who scored this score (usually a raw score, the amount of items the child got right) are within the average range. now... it looks like that you little one would NOT qualify for special ed in the area they were testing for if they were going by scores. They need to re-score the test at his chronological age, which may increase his score. sloppy sloppy. If he was born premature that have to take that into consideration as well.

Now, is the time they/ YOU need to set up an IEP meeting to talk about the test results. They need to explain their findings to you in a non-tech language you understand. I don't work with VM visual-motor issues but you need to have everything explained. It is always good to have someone along with you during the meeting, so they can ask the questions or ask for clarifications. Don't go by yourself and don't sign in agreement to anything until you have time to go over it and understand what they are. or are not suggesting.

I didn't read all the replys yet because I'm tired right now but I will next time for sure.

I never had any problems with disclosing to the school and have been in many IEP meetings. Though I cant recall if that was what they where called here. My son was labeled ED or emotionally disturbed after his father died. He was 11 at the time I think. But the school has known about my status since he was in kindergarden. I never hid my being HIV positive from my son and he certainly never hid much from anyone. He is a talker. A regular mister gabby gab. I've had teachers politely come to me and ask if my son was telling tales about me being infected. I'd look straight at them and shake my head and say "nope, he is telling the truth"I'd get anxiety on occasion because confrontation nerves me up. But in all I never really had a problem and his teachers have all acted professionally.

There was only one kid during Aaron's time in school <he is 18 now> that's parents flipped out when they heard I was HIV positive. And they actually had the nerve to confront me. LOL They looked so scared it was funny. They wouldn't even come within 5 feet of me.

OK, I'm hijacking long enough to say that when Mini was a wee baby, our #1 was about 3 1/2. Since her diagnosis, we were telling him that he needed to wash his hands, not leave his tissues laying around, ect, so his baby sister wouldn't catch his germs. Well, we're in Wal-mart one day standing in line to check out. As the lady beside us sneezes, she turns her head towards us. #1 says, big, bold, and loud, "Lady, cover your mouth! My sister has HIV!" I was horrified! I was waiting to be jumped in the parking lot. It's not a big deal to us now, but back then...whew! So, Win, I totally understand the "talker".